David Pearce, PhD of Sanford Research discusses how organizations can partner in rare diseases. That is the issue that is being addressed by a number of organizations, including Sanford Research and the International Rare Disease Research Consortium – two organizations that Dr. Pearce is highly involved with.
Dr. Pearce said that while there are about 30 million Americans suffering from a rare disease, many of those conditions may only have a few hundred individuals with one specific disease, making it difficult to create a network.
“So a number of years ago many funding bodies across the world decided to form an assembly where they would discuss the types of work that they were funding, whether it’s the National Institute of Health whether it’s the funding agencies from the European Union or the Canadian Institutes of Health,” said Dr. Pearce, adding, “and to discuss what type of direction of rare disease research to partner together to avoid some duplication of efforts and to promote collaboration and sharing of information.”
“I think the fact that there’s a community across the world, that’s really trying to address and partner together, that provides more hope for individuals with rare diseases.”